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Hoping for a Good Death

By Elizabeth Reis December 1, 2014 7:05 pmDecember 1, 2014 7:05 pm

Photo

Elizabeth Reis with her father, Ronald, two days before his heart attack in April 2014.Credit Elizabeth Reis

My 78-year-old father died recently after a sudden heart attack. I ought to have been prepared for the five days my mother, brother and I spent with him in the cardiac intensive care unit because I teach medical ethics at a university, and I am a member of a hospital ethics committee and have discussed many difficult end-of-life cases. But much of what happened – and what didn’t happen – came as a surprise to me.

My father got excellent care; his medical needs were attended to around the clock, and he received every available intervention. What I wished we had had, though, was a conversation with his physicians about end-of-life possibilities right from the beginning.

When my dad collapsed at a restaurant, the manager rushed over and performed CPR, but my dad stopped breathing several times during the resuscitation. The E.M.T.s shocked his heart six times in the four blocks between the restaurant and the hospital. During his five days in intensive care, he never achieved consciousness.

Doctors induced therapeutic hypothermia, a kind of deep freeze, to reduce the risk of brain injury by decreasing the brain’s oxygen demand, and then warmed him gradually over the next day or so. His eyes opened but never focused, he never looked at us or spoke again, but it was as if he was imploring, “Why am I still here? I just told you yesterday what I wanted if I was ever in this situation!”

And indeed, he had. Just the day before his heart attack, our family had a prescient conversation about end-of-life decisions. We all heard my dad say very plainly that he did not want any heroic measures to be kept alive, and that he would not want to live with any physical or mental incapacities.

And so when I arrived at the hospital the day after the heart attack and saw my dad hooked up to a ventilator to keep him breathing, a blood pump to keep his blood pressure up, an EEG machine to assess brain function, and an assortment of maybe a dozen IV medications and fluids dripping into his body, I recoiled not so much at the horror of the sight, but from the sad realization that he probably should have been left to die at the restaurant. My father would have been even more horrified than I was at his predicament.

But there’s always hope. Right? And because of that sliver of hopefulness, we kept him on those machines for five days, through the freezing and the thawing, the neurological assessments, the administration of one drug and then another to control this and that.

What I hadn’t considered before my father’s heart attack was the precise meaning of “not wanting to live hooked up to machines.” When people say that, it’s unclear whether they mean that they don’t want to live for the rest of their days in this condition, or that they don’t want to live for even a few weeks like that. The question of “how long?” is one we would all do well to consider.

If my father’s body improved enough to stay alive without the machines, but he never regained consciousness, then he would be doomed to what he most wanted to avoid. Honoring my dad’s wishes meant taking him off the ventilator while we still had that option.

The timing was key, but no one explained this or advised us how to determine when the time would be right. We now shudder that, because of hope, we were slow to see this choice and might so easily have missed it.

On the fourth day, my father’s cardiologist told us that despite some improvements toward stability, “the big picture was terrible.” Though no one can predict the future, we grasped that a full recovery was unlikely, and so we decided to let my dad die.

With the feeding tube removed, the ventilator detached and the multicolored EEG leads no longer emerging from his scalp, my mother could comb my father’s hair, and he looked relaxed, as the morphine and Ativan dripped slowly into his veins. He slept through the night and died peacefully the next morning.

Though hospital staff proved mostly supportive, we were jarred by the careless comment of one resident who entered the room and pronounced, “I don’t think you gave him enough of a chance.” To hear this moralizing judgment after the fact seemed unhelpful and even cruel. For many families, such words would have been devastating.

The biggest lesson I have learned is that every family should not only discuss end-of-life wishes but should act on them by filling out an advance directive. If my father had completed one, his end might have played out differently. By the time we told the medical staff that he didn’t want to be hooked up to machines, he already was, and we acquiesced in letting things take their course, with the hope that he might improve.

I can appreciate doctors’ reluctance to talk to families immediately about a patient’s ultimate demise. No one wants to dash hopes for recovery. But confronting the end from the beginning might alleviate some of the inevitable feelings of guilt that arise when people make the decision to end life support. Injecting a healthy pessimism – or realism – gives loved ones an opportunity to broaden the scope of their hope, to stretch hope in a way that accommodates a better death.

Elizabeth Reis is professor and chair of the Women’s and Gender Studies Department at the University of Oregon.

A version of this article appears in print on 12/02/2014, on page D6 of the NewYork edition with the headline: Hoping for a Good Death.